Search results for ‘Subject term:"learning disabilities"’ Sort:
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A review of quality of life issues and people with autism spectrum disorders
- Author:
- PLIMLEY Lynn A.
- Journal article citation:
- British Journal of Learning Disabilities, 35(4), December 2007, pp.205-213.
- Publisher:
- Wiley
This article draws on existing theory and research findings in the field of quality of life (QoL) and those with learning/intellectual disability and extrapolates current thinking in terms of measurable domains of QoL. The condition of autism spectrum disorders (ASD) is becoming increasingly prevalent in the sector of supported living and adult residential care. The author examines the core features of ASD and applies known characteristics to ways in which QoL domains and assessment tools can be adapted to people with ASD.
The nature and rate of behaviour that challenges in individuals with intellectual disabilities who have hearing impairments/deafness (a longitudinal prospective cohort survey)
- Authors:
- BUSKERMOLEN Willem Meindert, HOEKMAN Joop, ALDENKAMP Albert Pierre
- Journal article citation:
- British Journal of Learning Disabilities, 45(1), 2017, pp.32-38.
- Publisher:
- Wiley
Background: In this article, the authors describe a study of the prevalence of behaviour that challenges and which internal factors are related to behaviour that challenges in 21 people (fourteen are male, seven are female, varying in age from 12.4 to 42 years; mean 26.6, SD 7.27) with intellectual disabilities who have hearing impairments. Materials and Methods: Data were obtained by recording behaviour on a daily basis during one year using the ‘Individual Behaviour Observation and Rating Scale’ that was developed especially for this study. Results: It was found that 100% of the participants in this study showed behaviour that challenges, although this was not observed every day in each participant. Prevalence rates during a year varied from 1.8% to 77.3%. On average, the prevalence rate was 28.9%. The auhtors found a significantly negative correlation between behaviour that challenges and delay of communication as well as the level of social independence. They also found that in people with autism spectrum disorder, the prevalence of behaviour that challenges was significantly higher than in people without autism spectrum disorder. The level of intellectual disability as well as the level of hearing impairments was not related to the prevalence of behaviour that challenges. Conclusion: Because there are several patterns of increasing and decreasing behaviour that challenges throughout the day, it is not possible to draw one conclusion on this issue for the whole group. However, where certain individual patterns can be recognised, it is possible to make individual plans for the clients. This could mean an improvement in daily care and as a result an improvement in the quality of life for people with intellectual disability who have hearing impairments. Implications for clinical practice are discussed. (Edited publisher abstract)
In celebration: living a life through Positive Behaviour Support
- Author:
- SHEPHARD John
- Journal article citation:
- Tizard Learning Disability Review, 17(2), 2012, pp.69-75.
- Publisher:
- Emerald
Positive Behaviour Support (PBS) has become an established model of intervention for people with learning disabilities and challenging needs. This paper provides a narrative account of one person's experience of PBS. The individual, David, is on the autistic spectrum, has severe learning disabilities, major communication deficits, and some long-established challenging needs. Following a move to residential care at the age of 19, David experienced a series of re-locations, from one service to another, under different regimes of care, and of variable quality. The impact of this was that David became increasingly distressed and his behaviour became more extreme. In November 2009, David’s care was enlisted to a service provider committed to the principals of PBS. The decision was made for David to live alone, and a property was found available to lease. Responsibility for founding the new service was given to a skilled manager who was committed to PBS and well-versed in person-centred approaches. The paper describes the improvements to David’s quality of life following these changes to his care. The purpose of this paper is celebratory, rather than analytic. It presents a human story of a life being lived and attempts to capture the virtues of its ordinariness.
Comparing residential programmes for adults with autism spectrum disorders and intellectual disability: outcomes of challenging behaviour and quality of life
- Authors:
- GERBER F., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 55(9), September 2011, pp.918-932.
- Publisher:
- Wiley
Behavioural challenges have limited research using quality of life (QoL) as a treatment outcome in autism spectrum disorders (ASD) and intellectual disabilities (ID). This study combine QoL measures and objective observations of challenging behaviours (CB) to evaluate changes in adults with ASD and ID treated in different residential programmes in Switzerland. The authors hypothesised that a decrease in CB would be related to an improved QoL. This 45-month study followed 31 adults with ASD and ID who had been integrated into two residential programmes Autism Programme with a Structured Method (PAMS) vs. traditional programme for ID (No-PAMS)] for 2–19 years. QoL [Quality of Life Inventory in a Residential Environment (IQVMR)] and severity of autistic features (Childhood Autism Rating Scales) were evaluated annually. CB, as measured by the Aberrant Behaviour Checklist (ABC), including stereotypic behaviour and inappropriate speech, were repeatedly assessed every 3 months. In the PAMS programme, stereotypic behaviour and inappropriate speech (ABC scores) significantly decreased, and the IQVMR total score increased; in contrast, in the No-PAMS group, ABC scores did not change and the IQVMR total score decreased. Further analysis partially confirmed that the PAMS programme had an effect on CB and that QoL improvement did not directly depend on the type of programme but on reducing CB as measured by the ABC.
Thinking differently? Autism and quality of life
- Authors:
- SMITH Suzanne Jane, et al
- Journal article citation:
- Tizard Learning Disability Review, 24(2), 2019, pp.68-76.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to explore perceptions of quality of life (QoL) of people with a dual diagnosis of learning disability and autism to facilitate a better understanding for clinical practice and service provision. Design/methodology/approach: Mixed methods were used to gain perceptions of QoL from 20 individuals referred to their local diagnostic service. Individuals completed questionnaires and participated in in-depth interviews which were thematically analysed. Findings: Subjective wellbeing scores were lower than those found in previous research. Social interaction was raised extensively with participants describing both positive and negative perceptions. The need for tailored social support and the value of individual control over environment were raised. Research limitations/implications: The study was small in scale and limited to subjects who had been referred for a diagnostic service. The study identified the need for further investigation, particularly in relation to the social relationships domain of QoL, and the impact of stress and anxiety. Originality/value: This study demonstrated that it is possible to access views from this group and that these views are nuanced. It suggests differences between reported QoL in people with learning disabilities who are and who are not autistic. Service design and individual approaches could be improved by a better understanding of these differences. (Edited publisher abstract)
Commentary on “Thinking differently? Autism and quality of life”
- Author:
- WALDOCK Krysia Emily
- Journal article citation:
- Tizard Learning Disability Review, 24(2), 2019, pp.77-81.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to describe the possible impact of normalisation on the perceptions of quality of life (QoL) and the impact of this association on the research to date. This commentary reflects on the implications of limiting QoL research to autistic people who are perceived to be “more able”. Design/methodology/approach: This commentary discusses the implications of undertaking QoL research in the field of autism. Findings: This commentary argues for further consideration of the autistic voice in QoL research. Researcher epistemology and life experience, including experience of autistic people, is examined in terms of how QoL might be perceived and attributed. Further participatory research in the field of quality of life of autistic people, including those with a learning disability and engagement with a variety of autistic people, is called for. Originality/value: This commentary suggests that the existing definitions of QoL, founded on principles of normalisation, may not be completely applicable to autistic people, and that new ways of both defining and measuring QoL might be needed. (Edited publisher abstract)
Parental perceptions and satisfaction with family services in families of children with autism spectrum disorder and other developmental disabilities
- Authors:
- ZUNA Nina I., et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 41(3), 2016, pp.233-242.
- Publisher:
- Taylor and Francis
Background: This paper reports results from a study examining disability-related services at the family level. Method: The authors used descriptive statistics to examine (a) the types of disability-related family services families used, (b) how well family services met their needs, (c) the types of family services needed but not received, and (d) families’ perceptions of their knowledge of disability-related family services. Results: Families were mostly satisfied with the services they received; however, about 25% of the sample indicated that a few family services, such as respite, sibling support groups, and parent support groups, were needed but not received. Families were also slightly less satisfied with their knowledge of family services as compared to their ability to request services. Conclusions: Families identified specific services to meet the needs of all of their family members; however, their family support needs are not always being adequately addressed by current programmes. Initial assessments should be used to match family services to family needs, and follow-up consultations would help to ensure that the services received result in improved family quality of life. (Edited publisher abstract)
Factors that affect the physical and mental health of caregivers of school‐age children and transitioning young adults with autism spectrum disorder
- Authors:
- LEE Gloria K., SHIVERS Carolyn M.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 32(3), 2019, pp.622-634.
- Publisher:
- Wiley
Background: Although studies have examined quality of life (QOL) among family caregivers of individuals with autism spectrum disorder (ASD), little is known about potential differences in QOL based on the age of the individual with ASD, particularly in relation to caregivers’ needs, beliefs and coping mechanisms. Method: This study investigated 132 caregivers of school‐age children and 61 caregivers of transitioning young adults with ASD on measures of caregiving, strain, coping, family needs and QOL. Results: The results indicated that there were no significant differences in QOL based on the age of the individuals with ASD, although parents of children reported significantly more caregiving behaviours, with coping, internalized strain and health information needs predicted mental health QOL. Discussion: Age of the individual with ASD was not significantly related to caregivers’ QOL. More research is needed to determine independent predictors of caregiver QOL across the lifespan. (Edited publisher abstract)
Developing support and services for children and young people with a learning disability, autism or both
- Author:
- NHS ENGLAND
- Publisher:
- NHS England
- Publication year:
- 2017
- Pagination:
- 37
- Place of publication:
- London
The document provides guidance for Transforming Care Partnerships and their local partners in Clinical Commissioning Groups and Local Authorities in commissioning support and services for children and young people with learning disability, autism or both who display behaviour that challenges. It supplements Building the Right Support and the National Service Model, to ensure that plans are inclusive of children and young people. It is structured around nine core principles that describe what good services and support look like for children and young people. These include having a meaningful everyday life; person-centred and coordinated care and support; support for family and care staff to help the child or young person live in the community; choice about where to live; and access to specialist health and social care in the community. Each section lists relevant legislation and guidance. Appendices provide information on what works when working in partnership with families and describes how services should change as a result of the service transformation. (Edited publisher abstract)